Tuesday, March 3, 2015

MN Consults Day #2

Today was our second day of consults. When we woke up it was snowy, which made Raul happy, as he says winter is his favorite season! It was a bit of a long day for Raul, and by the end he was telling us that he was feeling grumpy and that he didn't like meetings. Since he doesn't understand the reason for the meetings, or what is being discussed, I would imagine it is pretty boring even with the iPad! Luckily for us it is very interesting, and we are excited about the possibility of Raul qualifying for the trial!

Today we had a long meeting with the social worker to go over everything, discuss lodging possibilities for when/if we come back, different supports available to families, schooling, some insurance info., etc. Then we got to take a tour of the BMT unit, which we had been excited about! The unit is amazing, and certainly not like any hospital unit I have seen before! Raul was impressed by the giant TVs and the colorful panel of lights in the ceiling. Then we had an anesthesia consult., and Raul liked the toys in their waiting room. He got to talk to a couple other kids who were in the toy area with him. Last we met with the nutritionist, who went over his current regimen and what might change during transplant (possibly GJ tube, less formula, slower rate, and/or TPN if he didn't tolerate his usual amount/schedule).

Raul was exhausted, and finally fell asleep at the hotel late in the afternoon after fighting it for a while. We had to get him up so that he will still sleep tonight, and he was not very happy as he was deeply asleep. Tomorrow we have another busy day, but luckily Raul won't be aware of it! We have to get to the hospital at 9, and his procedures start at 10:30. He will have an endoscopy, be unbandaged for skin biopsies, a bone marrow biopsy, esophogeal dilatation, and then I will be called in to re-bandage him. 


  1. Prayers for all of you. He is the bravest boy.

  2. What a kid! Best wishes in the days ahead!